#ActuallyAutistic trending

[gorgeousjewel]

I feel I will be flamed for this but I really would like to genuinely understand.

The hashtag #ActuallyAutistic is trending this evening and I think I know what it means - it's for those who have had a proper diagnosis and are a supportive and collective group. (please correct me if I'm wrong)

What I don't understand is what do people who use this hashtag want to achieve?

What are others doing wrong (beyond funding, support, recognition etc..)?

What can I and others do better?

Do #uthenticallyAutistic follows think that there are clear divisions and that those described as "Neurotypical" have an easy/different life?

Genuinely interested and would love to know more - please help me understand

The actuallyautistic hashtag was started by someone called neurodivergentrebel on Twitter as a place where autistic people could talk to each other. I discovered it when I was first diagnosed and have found some stuff I have read there to be useful but also found a lot of it to be problematic.

Firstly, NDR keeps picking fights with parents of autistic children, often accusing them of child abuse. She has encouraged her followers to pile onto parents, claims targeted harrassment when they respond. There is a mother called Connie Manning and they seem to particularly hate her and have even set up parody accounts to mock her.

The #actuallyautistic crowd see autism more as a personality trait and identity rather than a disability. I personally view my autism as both part of my identity and a fairly significant disability.

I also dislike the policing of language like telling people with aspergers diagnoses that they are siding with a eugenecist, telling people not to use functional labels and shouting at parents.

There are some self diagnosed people on there, some are people who are genuinely autistic and some are just irritating. I've seen a correlation between self diagnosed teenagers, people identifying as trans or non binary and even some who are also self diagnosed with dissociative identity disorder.

As far as I know and have seen myself it means someone is actually autistic, and is usually used alongside a response to someone asking a question about autism, in order to make it clear that it's a person who has lived experience as an autistic person answering.

It's considered an important distinction so that non autistic voices - especially NT experts and parents of autistic kids it seems - don't drown out actually autistic voices on matters of autism.

Of course, some people are dicks, and that includes some autistic people naturally, and so some will use the hashtag while being a dick.

In terms of the spectrum study, Simon Baron Cohen is quite a divisive figure in the autistic community and lots of vocal #actuallyautistic people aren't too happy about the focus of the study, which seems to be more about what makes people autistic (and, they fear, potentially preventing it as if autism is a disease?), rather than supporting autistic people. There's also a concern or annoyance that it hasn't involved autistic people in its creation, so it won't be as helpful as it could be.

Many of the parents attacked are also autistic (though may not realise it for some time)

I wonder how many people with an autism diagnosis think it’s perfectly fine to self ID as a man/woman
But not ok to self ID as autistic.

@Excelthetube

I wonder how many people with an autism diagnosis think it’s perfectly fine to self ID as a man/woman But not ok to self ID as autistic.

The thing is, to my knowledge you can't be diagnosed as a man / woman. So there's a distinction.

Of course, trans people much more likely to be autistic as well which will impact matters.

@Excelthetube

I wonder how many people with an autism diagnosis think it’s perfectly fine to self ID as a man/woman But not ok to self ID as autistic.

I imagine it is the other way round: they think iy is both ok to self id as autistic or as the opposite sex. After all identifying as autistic is not the same as self-diagnosing as autistic. Self-Id means it is an identity not a diagnosis and who can deny what you identify as?

@Excelthetube

I wonder how many people with an autism diagnosis think it’s perfectly fine to self ID as a man/woman But not ok to self ID as autistic.

I rarely come across gender critical autistic people, the AA crowd are very pro trans rights and very militant about it. You are not allowed to question the ideology and if you ask a question unrelated but don’t use inclusive language you’ll be “educated” - I saw this earlier today when an autistic woman wanted only women’s advice about comfy bras and most people went on about how her language l, that not only women wear bras and that using the word women was not inclusive, rather than answer her question.

I also rarely see autistic people speak out against autistic self ID because of the same kinds of pile ons GC women face being directed at them for questioning gender self id ideology. You’re just not allowed to be critical of it, even rationally so.

@GCAutist I’ve found there’s a real age divide - most autistic women I know who are older than about 35 or 40 are GC, but you’re right about it being difficult to say.

I think it’s because we were brought up with the “rules” being based around biology, whereas the “rules” are now around gender identity. I’d probably be utterly confused if I’d had to deal with gender stereotypes as a kid - I didn’t fit the female gender “coding” (partly because of my autism), so can see that would have made me think I must be a boy,

@GCAutist
Thanks that’s interesting, I got the general view on here that a lot of diagnosed autistic people do not want any self id in terms of autism.
And I have many autistic friends who are transgender as I help in a group. But I have never discussed this nuance, if that’s even the right way to word it. It’s tricky!

So I find it interesting.

I'd also say there is a sharp divide between GC and not amongst autistic women/women with Asperger's at 35, too. You have some outliers either side, obviously, but that's where I'd set it.

Everything in the world is falling apart so belonging to a tribe will become even more popular.

There are also, evidently from posts on here, huge amounts of men who have been told by a partner that they may be autistic when they are just actually cunts

Yes, this ^^ is something that really annoys me and is very damaging to the autistic community.

@gorgeousjewel - I'm sorry, I think my initial response to your OP may have been unnecessarily harsh. Of course it's fine to ask questions. Also it is true that there are other types of neurodiversity as well.

I find self-ID/self-diagnosis around autism hugely frustrating due to the lack of accuracy. I've spent several years going through the 'I think I may be autistic / I'm going through the autism assessment / I have Asperger's' journey and while I've been autistic my whole life (unknowingly) at no point prior to diagnosis did I tell people I was autistic. Partly because I'm not qualified to diagnose (and there are various conditions with similar traits) and partly because I didn't feel I could speak as an autistic person until I was sure.

I think this is what makes me unhappy about self-ID/self-diagnosis - you're taking a voice away/diluting the conversation of people with diagnoses. And with the self-ID crowd shouting so loudly it's worrying that their opinions of autism - right or wrong - are the ones people who are trying to learn about autism, hear.

I imagine it's trending because of the Spectrum10k survey. I found the feature on yesterday's BBC breakfast really interesting. Had no idea Paddy McGuiness has 3 autistic children. It really made me query whether our 4yo dd might actually be on the spectrum. We are struggling immensely at the moment and it made me look at things differently. What Paddy said about just getting his kids into the car for a trip to the supermarket really resonated with me.

@Excelthetube

I wonder how many people with an autism diagnosis think it’s perfectly fine to self ID as a man/woman But not ok to self ID as autistic.

These things are not remotely comparable though. If an assessment were to take place to diagnose sex (isn't that what happens at birth?) then that assessment would 'diagnose' a person as their biological sex.

I mean you can't self ID as a woman and speak for women. You can't 'be' a woman simply because you choose to be. So maybe it is comparable with autism, because you can't just self ID as autistic and speak for all autistic people.

I say this as someone who has a transgender daughter by the way. We all know she is trans though. She isn't a 'woman' she is a trans woman and that's how I make that distinction.

The actuallyautistic hashtag was started by someone called neurodivergentrebel on Twitter as a place where autistic people could talk to each other. I discovered it when I was first diagnosed and have found some stuff I have read there to be useful but also found a lot of it to be problematic.

I used to follow NDR on fb but unfollowed them as I didn’t agree with a lot of what was posted. The policing of language and shouting down of parents of autistic children. Shouting the loudest doesn’t make it fact.

[quote HadEnough798]@anotherdayanothertea - disagree with you about self-ID. Your asthma example doesn't work - e.g. you start wheezing around cats, and therefore be pretty sure you have a cat-induced asthma allergy, and know to avoid them or take an antihistamine. A doctor telling you that you have a cat allergy doesn't change your experience and how you know yourself to be.

Plenty of people (like me) don't seek a formal diagnosis. I don't like having the focus on me and I don't like talking to doctors (or anybody) about health or thoughts. Maybe some people self-ID wrongly - but in my case, having read a lot (and I mean a lot) about autism in adult females (including scientific papers in peer-reviewed journals), suddenly a hell of a lot of things about me and about my life make sense, including my social stress, excessive sensitivity and apparently different approach to life. My big sister has a severe eating disorder and has been diagnosed. I personally have always avoided doctors whenever I possible can and do not welcome diagnoses, ever really. (Example - I finally gave in and spoke to somebody about my generalised anxiety disorder in order to get access to CBT therapy. They confirmed I have GAD. I did not need them to confirm this to know it, I knew it already, but I was at that point 'undiagnosed'.)

I'm not going to go on twitter and declare I have autism and start speaking on behalf of people with diagnosed autism, but I equally don't think people can blanket say to somebody that their self-ID is invalid unless they happen to like talking to doctors and getting diagnoses.[/quote]
It depends on what the self-ID is for. If you self ID and use it to help yourself then great. I myself have ADD and lots of tips etc pnline helped before I got a formal diagnosis.
But if you use it to tell all and sundry then they’re entitled to not believe you. No adjustments or allowances.
I work with a lot of autistic people. Some have more/severe autistic traits than others. For others it’s not obvious to strangers. I suppose if you were in the first group people would cut you some slack but not in the second …

@anotherdayanothertea

I have read in various Facebook groups that it started off to let people know they were an autistic person rather then the parent of an autistic child. Now it's used for the 'self identifiers' to make a mockery of those of us who have an actual diagnosis.

That's interesting. I have autism and stay far, far away from digital communities that have anything to do with autism.

I also rarely see autistic people speak out against autistic self ID because of the same kinds of pile ons GC women face being directed at them for questioning gender self id ideology. You’re just not allowed to be critical of it, even rationally so.

I challenge it when I see it on MN, which is frequently. I'm autistic (yes, diagnosed) and GC.

I used to follow NDR on fb but unfollowed them as I didn’t agree with a lot of what was posted. The policing of language and shouting down of parents of autistic children. Shouting the loudest doesn’t make it fact.

Also the insistence that Autistic people can advocate for themselves and that parents must shut up ignores all the Autistic people who cannot communicate their needs and feelings, will never live independently and will always need their parents to advocate for them.

@XDownwiththissortofthingX

If autistic traits weren’t problematic - then autism wouldn’t be a problem would it?

I'm autistic with plenty of recognisable traits, and I don't view any of them as problematic. They're just a part of who I am. They might well be atypical, but I perceive them as perfectly normal for me, and I certainly don't view my autism as 'problematic', or other autistic people as 'problematic', or their autistic traits as 'problematic'.

The statement is a bit silly really, because it's clearly intended to prove something by inviting the reader to agree or disagree, when in reality the truth of the statement depends only on whether it's accepted by the reader or not.

It’s classified as a disability and something you get diagnosed with - so yes. Of course there are nuances. Some traits are not really problems - it’s just that NT’s don’t get it. Some are actual problems (like sensory issues).

Also I’m really happy for you that none of your traits are problematic but for a lot of people they are. That’s another reason for the huge infighting between the ‘community’. There are high earning professionals with seemingly normal lives and people who will never live independently. For the second group - of course their parents advocate for them ,because a lot of them can’t! But they get yelled down a lot.
It’s not a race to the bottom but equally it’s not wrong to acknowledge the difference between mild and severe disability. The former will struggle more than ‘NT’ but not as much as the latter. And for the latter the impact on the family is huge as their entire lives revolve around the autistic people.
Strangely people in real life are well aware of this, a lot of the shoutiness takes place online.

@AlfonsoTheMango that’s a wise decision! Most of my autistic friends don’t either.
I trawled through a few and the amount of venom was crazy. But that’s what happens when something suddenly gains a lot of publicity.
ADD forums by contrast are pleasant and helpful but it’s not part of popular culture yet (nobody’s made any movies about it and no billionaires so far!) so that’s probably why

@Mrsfrumble

I used to follow NDR on fb but unfollowed them as I didn’t agree with a lot of what was posted. The policing of language and shouting down of parents of autistic children. Shouting the loudest doesn’t make it fact.

Also the insistence that Autistic people can advocate for themselves and that parents must shut up ignores all the Autistic people who cannot communicate their needs and feelings, will never live independently and will always need their parents to advocate for them.

It makes no sense to shout down the parents - who else is going to push for what little support is available? Who else tries day in and day out to make things simpler and easier for my DC? Not the people shouting Actually Autistic that's for sure.

My DC isn't old enough/aware enough to be in these discussions but it doesn't mean the parenting and advocating experience is invalid.

I''m not disabled by my condition, ie my condition is not a problem - I am disabled by NTs' attitude toward my condition. I can''t change my condition but NTs can change their attitudes.